Lilly started a new phase of treatment. It's called Delayed Intensification. We are on day 9 of 29, then she has to make counts again, and then we start the second half of the phase which is another 29 days. So far it's lived up to it's name - it's intense. But, Lilly is doing the best she can and that's all she can do. Some days are a lot harder than others, but she's a tough girl.
The phase started last week with a spinal tap. She gets chemo in her spine to make sure there are no leukemia cells hiding in her spinal fluid. She has gotten used to going to the RTU and isn't nearly as nervous as she used to be. Especially because either mom or dad can go back to the procedure room with her while she falls asleep.
She usually ALWAYS picks mom... 99.99% of the time. But, this last time she chose dad. She was kinda scared, but she knew that it would make him feel special! She's such a sweet girl!
It had been a while since we had seen Dr. Doug - aka Prince Eric! Lilly loves him more than any other doctor. She lights up when she gets to see him and he is so cute with her and loves her right back! Lilly and Doug have a bond like no other. In one of the pictures he is showing her a text from his wife. He had been texting her about Lilly... So sweet!
Lilly is going to lose her hair again during this phase... :( She remembers how Michalla dyed her hair before she shaved her head, so she wanted to do the same thing. Lilly's hair is still pretty short so we just use chalk instead. She got a lot of compliments on her purple hair!!
Staying happy is the best way to get through these hard times. Lilly has to get the dreaded Erwenia shots because she's allergic to PEG, which most kiddos get. She has to get a chemo shot in her upper thigh every other day for 6 days. It's no fun!
Lilly gets scared, but she gets through it. We know what helps calm Lilly down... Tell her to focus on her breathing and rub her feet. The first day she got the Erwenia shot, she was extra nervous... She had grown since her last set of shots and so the dose increased a tiny bit. They put the chemo in 2 different syringes instead of 1! But, the dose only changed from 2.0ml to 2.1ml!! It's ridiculous that they didn't just put an extra 0.1ml in one syringe. So, she had to have 2 shots the first day, but then we got it approved by Dr. Doug to put it in only 1 syringe for the next 5 shots. Hallelujah! When two nurses came with two syringes, Lilly started panicking and almost hyperventilating. It's so hard to watch her do such hard things... But, as soon as they started giving the shots she was so calm, didn't move a muscle, and didn't make a peep! After it was over she was laughing/crying and kept saying "I did it!" She was so happy! Later after she had calmed down, she told me the whole time she was getting her shots she kept thinking about Michalla! That made my heart so full! To know that Michalla is still helping Lilly fight this battle in heaven... I'm so grateful for Michalla and the friendship her and Lilly have. We miss her every day, but we are grateful she is one of Lilly's angels.
Cute Bre. Lilly had her for a nurse when she was first diagnosed, so it's fun to see her over in clinic now too.
Even though Lilly started back up on steroids, she didn't have much of an appetite until about day 5 of 7. On our way home from the hospital we made a detour to Pei Wei's to get her some honey seared chicken. She ate all but ONE piece! It was so nice to see her eat.
These two miss each other so much when we go to the hospital.
Sisters are the BEST!
More of our favorite nurses... Becky and Aubri. Lilly thought it was fun to have orange hair for the day and that she matched Aubri's hair. :) We are so grateful for the awesome nurses at Primary Children's Hospital. They are so great and make the hard things Lilly has to go through, a little more bearable.
During all of this, Lilly was also supposed to start 1st Grade. It was a bittersweet day for me as well as for Lilly. It was hard for her to see her friends get to go to school and still be left behind. But, we are getting closer to when she can go back again. Which makes me nervous, because of all the germs that come along with school. But, we will cross that bridge when we get there. Lilly got up early on the "first day of school". We bought her a new school outfit just so she could still feel like it was a special day.
She wanted to go outside and wave to the bus as it drove by. The bus driver actually stopped in front of our house to pick her up, but we had to tell her that she would not be going... :( We are trying to get approved from the school district again to have her teacher come to our house once a week, but it'll probably take a while to get that going. For now, we are doing our own "school" at home.
We can do hard things. Being happy is the best kind of medicine. We take life a day at a time. We can only do our best. Lilly is the bravest girl I know! I love her so much and I'm so glad I get to be her Mom!